I Am in Here (3 page)

In some kind of way.

(age 9)

I wrote “Me” to let people know that even though I don't speak, I feel and understand the world around me. I want to be heard and respected. I want that for everyone, especially for people like me
.

W
hat is your great battle?

Mine is autism. For more than a decade, I have fought a great battle to heal Elizabeth and Charles. Elizabeth lost her ability to speak at fifteen months of age and fell into silence, but I refused to accept that she was lost, because I could sense her keen intelligence, even when she was a toddler. She had communicated with us, using her sparkling eyes and a growing vocabulary, until the day she was given a battery of routine vaccinations. Within a week, her voice was silenced and all the energy and mischief in her eyes drained away.

Elizabeth was officially diagnosed with autism at the Yale University School of Medicine's Child Study Center on May 16, 2000. It's a day I will never forget.

After my husband Ray and I watched our children complete two full days of testing, we sat in the cramped, windowless meeting room as the Yale doctor joined us and said, “I have good news and bad news for you.”

We looked at him breathlessly as he continued without emotion, “The bad news is both Elizabeth and Charles have autism. The good news is you live in New Jersey, which has the best autism schools in the country.”

We felt as if the building had come crashing down on us. To this day, I still wince when I hear someone say “good news, bad news.”

The doctor talked about the need to get the children into an intensive, one-on-one educational program immediately. Every day mattered.

Searching for any other scrap of hope, I asked him what we could do for the children medically. His answer was essentially “nothing.”

At that moment I knew virtually nothing about autism, but I could not accept this answer. We would seek medical help.

That night I took Elizabeth in my arms and cried. “Don't worry, sweetheart,” I told her. “Everything will be okay.”

She looked into my eyes and blinked hers slowly and deliberately, like a stroke victim, to show me that although she could not speak, she understood what I was saying to her.

I stroked her hair softly, saying, “I know you're in there, honey. We'll get you out. I promise you that with all my heart.”

Our journey has been long, and at times I have been in despair and wondered whether I could keep my promise to her. That is why her poetry is so precious: it is her glorious, life-affirming victory. She has always been in there.

Autism manifests itself very differently in Charles. It always has. He did not have the sudden regression but developed language very slowly. According to my mother, I didn't speak until I was two and a half. Charles's older sister, Gale, didn't speak until she was two and a half either, so we weren't too worried when he wasn't speaking at that age. But when he wasn't speaking at three, we were concerned and took him to a local developmental pediatrician who declared that he had a “language delay.” For us, as with so many other parents, the
A
word was not the first diagnosis but the last of a long, agonizing list. Once Yale gave us the
A
word for both children, the battle was joined.

Every educational and biomedical intervention that we have used with Elizabeth, we have also used with Charles, many times with very different results. That is why this battle can be so maddening for parents. Every child is so different.

Charles is our chatterbox, whereas most of the time Elizabeth appears to be locked in her own silent world. But we have learned through her writing that she misses nothing happening around her. She writes that she is “
in agony
” because of her inability to speak. Often the only way she can cope is by hitting her head repeatedly with her hand in frustration. The force of her frustration is sometimes so powerful that I feel compelled to put my hand on her forehead to cushion the blows. Times like these are when I most share Elizabeth's agony. I thank God that she has found a voice through her poems, such as this one where she projects herself into a beautiful future by dreaming it into being:

  
Wanderer
  

I am a dreamer.

That is me.

The south of France

I want to see.

To travel to a distant shore.

There is something more

I want to visit a place where I can

Help people in need

Maybe to feed

Or plant a seed.

These are my dreams.

I want to do this in my lifetime.

I want to travel and see other lands and people, not only to sightsee but to make a difference. I would like to teach people how to improve their lives, make their space a better place, and be happy and healthy. This is very important to me
.

You may wonder how such a young girl with autism and unable to speak found a way to communicate at all, much less with poetry. Seven years ago, in our desperation to connect with Elizabeth, we traveled to Austin, Texas, to see Soma Mukhopadhyay, who had taught her own son, Tito, to “write” by pointing out letters arranged alphabetically on a piece of laminated paper (commonly referred to as a “letterboard”). Tito is now an accomplished author who remains nonverbal and severely affected by autism. We found Soma because she and Tito were featured on the television show
60 Minutes
.

Soma has developed a teaching methodology called the Rapid Prompting Method (RPM), which is being used by hundreds of children and adults with autism. She starts off by assessing the student's primary learning channel (visual, auditory, kinesthetic, or tactile) and proceeds to teach them interesting, age-appropriate lessons. The student first answers her questions by selecting choices and ultimately uses a letterboard to write complete sentences.

For those of us who have been blessed to make this monumental breakthrough, Soma is a hero. In the pantheon of How People, she is at the top.

Over the course of several visits, Soma taught Elizabeth to write single-word answers and then full sentences with a letterboard. Soma has found that most of her students are so bright that they have taught themselves to read, but the simple act of pointing
to each letter, the initiation of creating words, is a monumental challenge for them. That's why a special approach is needed.

When Elizabeth finally learned to compose complete sentences, one of her first was, “
I finally got to talk
.” Such a simple sentence, but for Elizabeth it represented the end of years of tantrum-filled, lonesome isolation. For me, it was an intense moment of both joy and heartbreak. It was like Helen Keller's signing “w-a-t-e-r” for the first time.

Our children are complex and misunderstood. Elizabeth wrote the “Me” poem included at the beginning of this chapter after one particularly frustrating week with a matched set of speech-language pathologists. The first was an expert in apraxia (disorders of motor planning) and the second was an expert in initiation (getting speech started). After hours of evaluation, the apraxia expert said that Elizabeth's main problem was initiation, and, of course, the initiation expert said that the main problem was apraxia.

These experts, and many others before and after them, could not tell us how such an intelligent child could read words and write poetry but not speak. One even suggested in Elizabeth's presence, “Maybe she just doesn't want to talk?” I wanted to scream. The “Me” poem was her response. When I saw those words “
I am in here
,” I cried tears of pain and delight. She was taking a stand for all those afflicted with autism. Years later, Elizabeth wrote a second “Me” poem in which she tries to explain her daily battle:

  
Me Revisited
  

I can't sit still.

What's wrong with me?

My body is doing things

I can't explain.

My dignity I am trying to maintain.

People stare at me

When I rock and shake.

I don't know how much

More I can take.

So much to deal with

Going on inside me.

I wish I could get better.

I want to be set free

From my silent cage.

Some of the people at school who do not know me make me feel uncomfortable. They stare at me. I would not rock and shake if I could stop it. It just happens sometimes. I wish they could understand, but mostly I wish I could explain it to them
.

Thanks to Soma, Elizabeth now has a voice, but she still cannot speak. She is my beautiful songbird who yearns to sing. She feels alone and misunderstood. In many ways, her journey is not unlike our own. Most of us have, at one time or another, felt isolated and alone.

High school is not easy for most kids. I was no different. In my junior year, my English teacher, Denny, sensed my loneliness
and gave me a copy of
Look Homeward, Angel
by Thomas Wolfe. Lucky for me, Denny is a deeply spiritual man who saw how this book would reach me.

Look Homeward, Angel
was life-changing for me. Wolfe's prose, which reads more like poetry, connected with me in a way nothing else had. Wolfe wrote about the tribulations of growing up, of desperately longing to move beyond the feelings of isolation that beset us all. Ironically, it was his own struggle to connect with others that allowed me to connect with him:

Which of us has known his brother? Which of us has looked into his father's heart? Which of us has not remained forever prison-pent? Which of us is not forever a stranger and alone? . . . Remembering speechlessly we seek the great forgotten language, the lost lane-end into heaven, a stone, a leaf, an unfound door. Where? When? O lost, and by the wind grieved, ghost, come back again.
[1]

Elizabeth's autism has been a barrier and a connector as well. In many ways, I am connected with her more deeply because of her autism. What thirteen-year-old goes for walks in the woods with her mom? Elizabeth's poetry, while speaking of her difficulty in connecting, has allowed her to connect with many. She is prison-pent in her silent cage, but she speechlessly opens a heavenly door in the forgotten language of poetry.

Elizabeth's autism has created the kind of connections I yearned for in my school days. Our shared battle has opened my heart to deep connections with other autism parents. I have witnessed the same unspoken bond between cancer survivors. You don't need to say much. You know what the other person is going through. You hug each other and cry. Sometimes, as Elizabeth has taught me, words are not needed.

Buried Treasures

Connected to all before autism

  
The Bird
  

Girl in garden counting flowers

In the garden lives a bird.

Children come and go and play

And the bird flies away.

(age 9)

I wrote this because I sometimes feel like the bird. I am overwhelmed at times by the noise and activity around me. So I often feel like I would like to fly or get away from it all
.

O
n one of our first visits to Austin, when Elizabeth was six years old, Soma asked her to write a word that started with
A
, and to our surprise Elizabeth typed, “
Agony
.”

Soma asked her if she knew what agony meant, and she replied, “
Quite so
.”

Soma took a deep breath and asked again what agony meant, and Elizabeth typed, “
Pain
.”